PKU.com Community Discussion Forum Parent support Don’t know where to put this… Reply To: Don’t know where to put this…

#5999
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krisalex216
Member

Hi, nThanks for responding. I was getting kind of worried that I scared you all off. LOL He seems to be ok, there are a few little things that we have noticed, hyperactivity (some people have said it’s not ADHD…but they don’t know what it is), the musty smell in his sweat and urine, there was something else too I’m sorry I just don’t remember off the top of my head. Everything is such a blur right now, and the fact that we got this letter and never knew anything about this is really making us wait until we can call someone on Monday to get some answers. They may have gotten a list mixed up, and have gotten people worried wrongly. I just don’t know what to think.
The letter says they are participating in a new treatment program using medication called Sapropterin. We are in Ohio.
Thank you again for responding.

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